New to The Group with Some Questions

[dave9136]

Hi, my name's Dave and am so happy to have found this group. Nice to meet you all.

I'm 55 years old with type 2 diabetes and kidney disease. I've had the diabetes for about 10 years and the ckd for about 4. My GFR has been ranging between 41 and 46. My diabetes is currently under control and I don't have high blood pressure. Other than lots of anxiety about my health, I feel good overall. I'm not currently under the care of a nephrologist, but have an appointment to see one in a few weeks.

I have a few questions.

1. The Arbs and Ace inhibitors... Do most people with kidney disease take them? For those that do, do you find them helpful? I've read they can lower a person's GFR, so am concerned about taking them if told by the nephrologist that I should start doing that.

2). Nuts are a big part of my diet and because their relatively low in carbs I feel they've greatly helped me keep my blood sugar under control. I was reading, however, on various websites that nuts should be avoided in people with ckd because they're high in phosphorous. I went to a Davita ckd education class recenty, however, and the counselor there told me that they're ok to eat because unlike the added phosphorous in some sodas and processed foods, a very small amount of their phosphorous is actually absorbed in the body. Any thoughts about this?

3. A recent couple lab tests showed that my PTH level is high. Is this common in people with CKD? I'm concerned.

Thanks in advance for your comments.

Dave

[Bassetmommer NKF Ambassador]

Hi Dave and welcome,

The answer to question one is something you should run by your doctor. Every person has different needs and reactions. I am not sure what an ARB is.

Question 2: If you can eat nuts, then eat nuts. Do you know what your phosphorous levels are? Plant based phosphorous is not absorbed the same as chemical induced phosphorous. We actually only absorb about half of the reported amount. So things like oat meal which used to be off the CKD diet is actually not bad as originally thought. Soda and dairy creamers which are high is phosphorous are not good. This is where a renal dietician can help you out.

Question 3, yes, there often is a connection to elevated PTH with CKD.

kidney.org/atoz/content/sec...

ncbi.nlm.nih.gov/pmc/articl...

[orangecity41 NKF Ambassador in reply to Bassetmommer]

Oatmeal is part of my renal diet in a prescribed amount.

[dave9136 in reply to Bassetmommer]

Hi Basset,

I'm not sure what my phosphorous level is. On one of regular lab tests there's a measurement for something called alkaline phosphatase, but I think that's different than phosphate.

ARB is an abbreviation for Angiotensin II Receptor Blocker. It's a blood pressure med that's given to some people with kidney disease. It's main function I think is to slow down the loss of protein from the urine.

[Jayhawker]

Welcome, Dave

First, I, too, have Type II diabetes and CKD. My diabetes is in check without medication and has been for about 5 or 6 years at this point. (I was initially diagnosed 8 1/2 years ago.)

I do not take blood pressure medications. Although, my first nephrologist originally tried various blood pressure medications with me as well as a diuretic. However, both caused extremely low Bp for me. So I now am on no BP medications or diuretics. (I'm in Stage V but not yet on dialysis. I'm still eliminating fluids.)

I have eaten a serving of steel cut oatmeal every morning for breakfast and 15 raw almonds every day for lunch since being diagnosed with CKD. My phosphorous has remained in the normal range. As has already been shared, researchers have learned that naturally occurring phosphorous is absorbed differently than that added to foods like sodas and other processed foods. Clearly, my own labs have supported the notion that I can safely eat the oatmeal and raw almonds daily without problems. But your labs may be different than mine. Your nephrologist will be able to help you with this. And, I'd strongly encourage you to see a renal dietician as soon as possible. It can be tricky to balance both the type II and the CKD dietary needs.

I've only recently developed a slight elevation in my PTH. It has been put under treatment, but it wasn't elevated in my labs until this past summer.

So, as you've already heard, this is all very individual. I'm glad you'll be seeing a nephrologist. You'll want to pull together a good treatment team. You're already doing what you can to educate yourself. That's key as well.

Jayhawker

[dave9136 in reply to Jayhawker]

Thanks for the support. Yes, very difficult to manage both the CKD and diabetes dietary needs at the same time.

You wrote than your ckd is in stage 5. How long did it take for you to get to that stage after being diagnosed? Putting aside the lab test results, did it become obvious to you at some point that the disease was progressing? Did your blood pressure begin to rise? Did you start to itch, have no energy, urinate less or more often, etc.? Although some of my lab results may show that my ckd is progressing, I don't feel any worse physically than I did when I when first diagnosed 4 years ago, but I'm assuming that will change at some point.

[Bassetmommer NKF Ambassador in reply to dave9136]

HI dave,

I wanted to answer this question about knowing. One issue with CKD is that the symptoms vary so much and sometimes there are none. I was stage three for many years and it did not affect me at all. When the problem became evident for me, I had slipped to stage 4. I was very tired....but I had anemia. I was short of breath, but again, my blood levels were terrible. I have Psoriatic Arthritis, so pain is a constant with me, and so I could not contribute that to CKD. I had gained weight which did not help with being tired. My A1C was up to 9. My BO went up. Once diagnosed and started changing things around, many things improved.....except my GFR. I got my iron levels and my blood level back up, so no more short of breath. My A1C is 5.9. My BP is good, not fabulous. But my GFR actually went down a point and then came back up one point. So that pretty much is the same. I feel fine and have a lot of energy, considering the other factors.

[WYOAnne NKF Ambassador]

Hi and welcome to this fantastic group of people!

First I guess, it's really important to have your BP under good control. It's really important not to cause more damage to your kidneys, but can also cause scarring of your heart & heart attack or stroke. Always rely on your nephrologist to put you on the right medication. Everyone is different. So an ACE inhibitor for one person, could be bad for another. Depending on your labs and other issues you may have, your nephrologist needs to make the decision what is best for you and OK for your kidneys.

I am 19+ years post transplant. And yes, parathyroid does seem to go "hand and hand" with kidney disease. My nephrologist has been graphing my calcium for the last couple of years, since high calcium can be a sign of parathyroid problems. Mine has not been consistent, so for now is just keeping track.

Keep us posted with your kidney journey!

Take care.

[dave9136]

I appreciate the support. Thanks, and I'm glad to hear that you've been doing well post transplantation. Wow, 19 years.

Just out of curiosity, how long did it take for you to get the kidney after you were put on the waiting list? Is your kidney from a live donor or from a cadaver? In general, is getting one from one place or the other better with respect to how long it will last? I'm assuming your taking anti rejection drugs. Are you experiencing any bothersome side effect from them? Sorry for all the questions. I'm not familiar with the transplantaion process and the aftercare.